All of My Tomorrows

Remember the Janis Joplin (or Kris Kristofferson) hit “Me and Bobby McGee”?  There is a line in that song that goes:

“I’d trade all of my tomorrows,
for one single yesterday”

Would you?

If it was possible for you to go back to one single event in your life and relive it, would you trade all of your tomorrows to do it?

Would it be worth it to go back and choose a different path, to make a different choice that shaped the rest of your life?  Would you try and go back to find someone who drifted out of your life or hold someone close to you that died?

Or would you want to go back to live one day before you got this disease?

I’ve wrestled with this one for a long time.  What if I could go back and feel like I felt before I got AA (adhesive arachnoiditis), would I really want to?  I have a feeling that a lot of folks are saying “YES!!!!” of course !!! why not?

I would not want to got back to a day before I got AA.  Think about that for a minute,

I would not choose to go back to a day when I wasn’t in constant pain.  I would not want to skip this part of my life, I would not want to make different choices, I do not want to go back in, time even if it meant I could live without pain.

I think the biggest problem we all face is the wishing well.  I wish things were different, I wish I felt better, I wish I could plant a garden, I wish I could run with my dog, I wish I could go to the grocery store alone and cook a big dinner for my husband. That wishing well is a bottomless pit,  full of things that we can’t do anymore.  Heck, I wish I was 15 again so I could see my first Alice Cooper concert all over again.  But what would we really gain? 

All of the choices you make in your life every day, made you what you are at this moment.  Of course I would like to live pain free, but if this had never happened to me, I would not be the person I am today.  And as hard as it is to admit, I’m a better person now, than I was before.

Before I got AA, I was healthy, skinny, worked very long hours by choice, took care of the house, the shopping and the cooking and cleaning.  I was rushing through my life without stopping to enjoy a walk with my dogs, a day with my husband or even a movie.  My job was controlling my life.  I worked all day, came home and made notes for the next day, brought home work when I could, researched problems in my text books from technical school.  I never stopped. 

I even took calls on every vacation for 7 years.  I worked in Disney World, the Daytona 500 Speed Week, the Smokey Mountains, a car show in St. Paul, a hotel in Kokomo Indiana.  The only time I did not take calls was when I was in the hospital having back surgery.  The only reason I didn’t take calls then was because I was on morphine and mostly I was unconscious.  I took calls the Monday following my release from the hospital and worked almost every single day of my recuperation.

I was also doing things for all the wrong reasons.  I wasn’t working hard to lead a better life, or help people.  I was working hard to please myself.  I think that’s a pretty selfish thing to do. I wasn’t very close to my family.  I thought I was, I said I love you at all the appropriate moments.  But I wasn’t really present at so many things.  I never stopped to really listen to anyone, to recognize the changes in my nephews, to see how happy my sister Clare and her husband are with their beautiful kids.

But then, just when I thought I had it all,  my life changed. I felt like I had the rug pulled out from under me and I didn’t have the faintest idea of how to handle this.  I cried so much the first few months.  I cried every day.  I never told my husband the truth about how much this hurt, I never told anyone that this condition is permanent.  I was living a lie.  I wouldn’t let myself accept the fact that this is permanent and that I have AA.

I wouldn’t even tell my doctor that the pain meds were not enough help or that I was depressed and needed help with dealing with the emotional side of this disease  I didn’t tell him the truth for 8 months.  I just didn’t want to take narcotics, I didn’t want my life to be lived in a drug induced haze.  (I was completely wrong about this by the way.  I’m able to function ok with the meds, I just can’t drive, work, or pay bills.)

So there you are just moving through life, making things nice for everyone around you and suddenly, there is this huge problem.  A problem for which there is no solution.  I was left floating above my house looking for what used to be my life.

I wanted everything in my life to move along like I was living in a ‘50’s sitcom.  I wanted the Brady Bunch life but I wanted to be Donna Reed.  I wanted the neat hairdo, the starched shirt dress and heels.  The perfectly clean home, with none of the problems that everyone faces.  AHHHHH, life in the sitcoms, how perfectly, perfect.  From Barbara Billingsley’s pearls, to Florence Henderson’s shag hairdo, now that was living.

How could I live a sitcom life with this pain?  Where was my life?

And then a wonderful thing happened.  Someone reached out to me for help.  All he did was ask me to proof something he was going to post on his web site.  I had no idea how that one thing, would change my life.

When Colin asked me for help, I felt useful.  After crying daily for 6 months, laying in bed, not knowing what to do or how to do it, someone asked me for help and it was something I could actually do.

Shortly after that, I wrote my first article for this web site.  And that began my journey back into life.  A real life.  No holds barred, no pretending that everything is ok and no smoothing out the wrinkles.  I was forced from my cocoon.  I was forced to face my problems, spell them out for all to see.  It was time to stop pretending and when that happened, I was able to get on with my life.

I had been living in suspended animation.  I was watching my life float by, without participating in it.  I was a champ at feeling sorry for myself and building up walls and lying about how I felt. 

But all that changed. This is me, this is my life now.  I’m in pain, I’m mad as hell about it, but I’m still here.  I can still make a difference and for whatever reason, I’m needed.  I have a purpose in life. 

Thank you all for giving me a reason to get out of bed when I can.  When I can’t, my husband gets my laptop and hands it to me in bed.  I’ve written nearly every single article while flat on my back. 

Not a lot of occupations allow you to work flat on your back, while taking narcotics.....well not any occupation that I would actually do anyway, for more information on that see my story “Norwegians Keep Their Clothes On”.

Thanks for listening,

I mean it. 

Thank you from the bottom of my heart,

Anne

Comments

[Quyen]

Thank you for blogging! My boyfriend has Crohn's disease that has been refractory to almost every treatment the doctor has tried. He is basically living in constant pain and I'd like to help but I really don't know where to begin. It is like pulling teeth to get him to communicate with me, but reading your post helps me to better understand why he might feel so isolated. How have your loved ones helped you cope with chronic pain? I wonder if you have any suggestions for me? Once again thanks for sharing your story!

[zed null]

anne... thank you... for just being you... and sharing your self, your thoughts, and being real!!!

and... even if... i "could go back in time"... some things that "happen to us"... we're "genetically pre-disposed to"... so, "going back"... wouldn't "change anything"; either for me... or you!!!

in sincere fellowship...

zed

[deborah]

oh, Anne, I can so totally relate to it all - especially the part where you don't really want to tell the doc about how much pain because you don't want the narc, and you have to just get through for everyone else. you want the Brady Bunch life, and yet, I'm really living in Roseanne's house. I added that part. I used to have June Cleaver's house and was Martha - and damn it, I was called both. Now, I'm expecting a new cleaning person to interview today - go figure. why??? well, I sure can't do it anymore.

but would I trade a yesterday? probably not.

[JD]

Your post and question is compelling, I do not life in constant pain but have lost people close to me. I would love to have one more Sunday afternoon in the summer, eating dinner at my parents house after church, and later playing cards with a house full of fun people. My only change would to allow those folk to see me as an adult rather than a child.

[The Pretender]

I'm where you were when you first started...my pain started when i was 20 and is just getting worse and worse...i just turned 22...i was in the prime of my life, or, thought it would be coming...I'm lying to everyone about my pain because i'm embarassed, and i can't handle it,and there's nothing anyone can do...sorry, i know i'm just throwing myself a pity party but i needed to...i'm sorry. thanks for the post.

[brian]

I am glad you have found something that makes your days go by for you. Like Colin I suffer from chronic pain. I have had knee pain from when I was 12 years old. I remember the Doctors telling me they were sorry and there was nothing they could do for me. When you are 12 you selfishly feel like you are being gypped of fun and games and the ability to be pain free. It got worse as I got older, I am currently 50 and have had 12 knee operations including 6 knee replacements and several procedures on my cervical spine. I have 3 children one of which is only 7 years old. My wife is divorcing me and I have to admit that sometimes it can be over whelming. There are bad days and some that are not so bad. I am currently under the supervision of a great pain management specialist that has been able to keep me going on a daily basis. When I think about the different medications that I take and how some people think because you take narcotics for pain you are a drug addict I get angry. I can't live my life for them. I am able to do many things with the help of narcotics. I have read an article pulled from a link on your site about the medtronic pain pump. Though several of my Doctors are suggesting I get the pain pump installed I still like the flexability of taking my medicine when I need it. When I have to go to the supermarket I take the extra medicine and hang on the shopping cart and struggle through to completion. Of all the things that are hardest for me it would be the fact that many people don't understand the wide variety of problems that go with chronic pain. In ref to my wife, she was always only interested in what have I done lately. I am sad that being married for 23 years is being thrown out due to my wife's inability to deal with my lack of getting the things done that she wants me to do. Oh well. Good Ridance and I will keep hanging in there for my children who love me very much. I wish you the best and will visit your web site on occasion.

[Mike]

There are many turning points in my life. Some that affected me so deeply that I lost myself for a long time and I wished I was gone.These did not help me I wish I could go back.
There are some people I wish I had never met maybe not say hello to, the beautiful woman in anatomy class whose death later on was something that put my life on hold for a long time making it so I could really never love again and have a family of my own. Now I'm so afraid that when my brothers and sister are gone I will (they are much older than I) be so alone. That is the sheer joy and despair of having a close family and not having one of your own when your the last one the heartache will be unbearable.
Maybe go back and take that chance you were to stupid or to nervous to make.Sometimes entertaining these thoughts is all you have that keeps you going.You can't share these feelings with close family who love you so unconditionally because this kind of revelation would make them so sad.
I would gladly give up my remaining days to go back have a little voice in my head convincing me to take that chance, not to say hello maybe then I could have brought more life and joy to this world.
I know this isn't possible and I try to comfort and brighten the day for all those around me but still what if